A Journey through Chronic Pain: Heal Me by Julia Buckley

Julia Buckley can pinpoint the very moment when her battle with chronic pain began: it was a Tuesday morning in May 2012, and she was reaching across her desk for a cold cup of coffee. Although she had some underlying health issues, the “fire ants” down her arm and “carving knife” in her armpit? These were new. From there it just got worse: neck and back pain, swollen legs, and agonizing periods. Heal Me is a record of four years of chronic pain and the search for something, anything to take the pain away. “I couldn’t say no – that was a forbidden word on my journey. You never know who’s going to be your saviour.”

Having exhausted the conventional therapies available privately and via the NHS, most of which focus on cognitive behavioral therapy and coping strategies, Buckley quit work and registered as disabled. Ultimately she had to acknowledge that forces beyond the physiological might be at work. Despite her skepticism, she began to seek out alternative practitioners in her worldwide quest for a cure. Potential saviors included a guru in Vienna, traditional healers in Bali and South Africa, a witch doctor in Haiti, an herbalist in China, and a miracle worker in Brazil. She went everywhere from Colorado Springs (for medical marijuana) to Lourdes (to be baptized in the famous grotto). You know she was truly desperate when you read about her bathing in the blood and viscera of a sacrificial chicken.

Now the travel editor of the Independent and Evening Standard, Buckley captures all these destinations and encounters in vivid detail, taking readers along on her rollercoaster ride of new treatment ideas and periodically dashed hopes. She is especially incisive in her accounting of doctors’ interactions with her. All too often she felt like a statistic or a diagnosis instead of a person, and sensed that her (usually male) doctors dismissed her as a stereotypically hysterical woman. Fat shaming came into the equation, too. Brief bursts of compassion, wherever they came from, made all the difference.

I was morbidly fascinated with this story, which is so bizarre and eventful that it reads like a great novel. I’ll be cheering it on in next year’s Wellcome Book Prize race.

My rating:

Heal Me: In Search of a Cure is published today, January 25th, by Weidenfeld & Nicolson. My thanks to the publisher for a free copy for review.

Julia graciously agreed to take part in a Q&A over e-mail. We talked about invisible disabilities, the gendered treatment of pain, and whether she believes in miracles.

“I spent a day at the Paralympic stadium with tens of thousands cheering on equality, but when it was time to go home, nobody wanted to give me a seat on the Central Line. I was, I swiftly realised, the wrong kind of disabled.”

Yours was largely an invisible disability. How can the general public be made more aware of these?

I feel like things are very, very gradually moving forward – speaking as a journalist, I know that stories about invisible disabilities do very well, and I think as we all try to be more “on” things and “woke” awareness is growing. But people are still cynical – Heathrow and Gatwick now have invisible disability lanyards for travellers and someone I was interviewing about it said “How do I know the person isn’t inventing it?” I think the media has a huge part to play in raising awareness, as do things like books (cough cough). And when trains have signs saying things like “be aware that not all disabilities are visible” on their priority seats, I think that’s a step forward. Openness helps, too, if people are comfortable about it – I’m a huge believer in oversharing.

“I wondered whether it was a peculiarly female trait to blame oneself when a treatment fails.”

You make a strong case for the treatment of chronic pain being gendered, and your chapter epigraphs, many from women writers who were chronic pain or mental health patients, back this up. There’s even a name for this phenomenon: Yentl Syndrome. Can you tell us a little more about that? What did you do to push back against it?

Yentl Syndrome is the studied phenomenon that male doctors are un/consciously sexist in their dealings with female patients – with regards to pain, they’re twice as likely to ascribe female pain to psychological reasons and half as likely to give them adequate painkillers. In the US, women have to cycle through 12 doctors, on average, before they find the one to treat their pain adequately. There are equally shocking stats if you look at race and class, too.

I did absolutely nothing to push back against it when I was being treated, to be honest, because I didn’t recognise what was going on, had never heard of Yentl Syndrome and thought it was my problem, not theirs. It was really only when I met Thabiso, my sangoma in South Africa, that I felt the scales lift from my eyes about what had been going on. I make up for it now, though – I recently explained to a GP what it was, and suggested he be tested for it (long story, but we were on the phone and he was being incredibly patronising and not letting me speak). He hung up on me.

“In my head I added, I don’t care what they do to me, as long as it helps the pain.”

Meatloaf sang, “I would do anything for love, but I won’t do that.” Can you think of anything you wouldn’t have done in the search for a cure?

Well, I refused a spiritual surgery from John of God – I would have had the medical clamp up my nose or happily been cut into, but I was phobic about having my eyeball scraped – I had visions of Un Chien Andalou. So I had said repeatedly I was up for the other stuff but wouldn’t do the eye-scraping, and was told that probably meant I’d get the eye-scraping so I should go for the “invisible” surgery instead. But I can’t think of anything else I wouldn’t have done. The whole point, for me, was that if I didn’t throw myself into something completely, if I didn’t get better I’d never know if that was the treatment not working or my fault. Equally, my life was worthless to me – I knew I would probably be dead if I didn’t find an answer, so I didn’t have anything to lose.

Having said that, I know I would have had major difficulties slaughtering a goat if I’d gone back to Thabiso – I’m not sure if I could even have asked anyone else to do that for me.

Looking back, do you see your life in terms of a clear before and after? Are you the same person as you were before you went through this chronic pain experience?

There’s definitely a clear before and after in terms of how I think of my life – before the accident and after it. The date is in my head and I measure everything in my life around that, whether that’s a work event, a holiday, anything else – it’s always XX months/years before or after the accident. I don’t have the same thing with the day I got better because I try not to think about what happened and why, so I still calculate everything around the accident even though I should probably try and move my life to revolve around that happier day.

Largely I’m the same person. I still have the same interests and the same job, so I haven’t changed in that way. But I’d say I’m more focused – I lost so much of my life that I’m trying to make up for it now. So I don’t watch TV, I don’t go out to anything I’m not really interested in, I didn’t go to the work Christmas party because I could think of better things to do than stand around sober shouting over music … so I’m more ruthless about how I spend my time.

I also think invisible illness – or people’s reaction to it – hardens you. You have to grow a shell, otherwise you wouldn’t get through it. So I’m probably more brusque. I’m also really fucking angry about how I was treated and how I see other people – especially other women – being treated and I know that low-level anger shows through a lot. But as I said to a friend (male, obviously) recently, when he read my book and was upset at my anger: once you start noticing what’s going on, when you see people’s lives ruined because of pain, when in extreme cases you see women dying because of their gender, how can you not be angry? I think we should all be more angry. Maybe we could get more done.

You got a book contract before you’d completed all the travel. At that point you didn’t know what the conclusion of your quest would be: a cure, or acceptance of chronic pain as your new normal. Given that uncertainty, how did you go about shaping this narrative?

For the proposal for the book I did a country-by-country, treatment-by-treatment chapter plan (it was wildly ambitious, but pain and finances put the dampeners on it) and suggested the last chapter would be at a meditation retreat in Dorset, learning acceptance. I put in some waggish comment like “assuming I don’t get cured first hahaha”, but secretly I knew there was no way I could write the book if I wasn’t cured, partly on a very literal level – I physically wouldn’t be able to do it – but more because I didn’t see how I would ever be able to accept it. I actually postponed the deadline twice for the same reasons, and when I realised deadline 3 was looming and I wasn’t better and I was going to have to suck it up and write it I was distraught. I genuinely thought that putting all that I had been through onto the page and having to admit that I had failed – and failed my fellow pain people I was doing it for – would kill me. So I don’t know what I would have done if it had come to the crunch; luckily I got my pot of white chrysanthemums and didn’t have to see what happened.

You are leery of words like “miracle” and “cure,” so what terms might you use to describe what ended your pain after four years?

Something happened, and it happened in Brazil. But I would never tell anyone to hop on a plane to Brazil. What happened to me happened after four years of soul-searching and introspection as well as all those treatments. If I’d gone to Brazil first, I don’t know what would have happened.

Who do you see being among the audience for your book?

I’d love people who need it to read it and take what they need from it, but I’d also love doctors to read it – as an insight into patient psychology if nothing else – and I’d love it to be seen as a continuation of the whole #MeToo debate. That sounds holier than thou, and obviously it’d be great for people to read it as a Jon-Ronson-meets-Elizabeth-Gilbert-style romp because I’d feel like I’d succeeded from a writing point of view, but to be honest the only reason I wanted to write it in the first place was to show what’s happening to people in pain, and once I got better, the only thing that mattered to me was getting it into the hands of people who need it. I know how much I needed something like this.

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Very glad to read that Buckley finally found relief for her pain, however it came about. Her GP’s patronising attitude reminded me of reading Giving Up the Ghost in which Hilary Mantel talks about her inability to get a diagnosis for her endometriosis. I would have liked to think things have changed since then if only because we have many more women GPs

One of her chapter epigraphs is from that Mantel memoir. Alas, it sounds like women still have to fight to get their chronic pain acknowledged and treated, especially when their doctors are male. That said, some of Buckley’s medical heroes were men.

Tim Parks the novelist wrote an interesting account of his battle with constant pain in “Teach us to sit still: a sceptics search for health and healing. ”
Like Julia, he was prepared to try anything, as conventional medicine had no answers.

I must read this. I suffered from chronic pain for nearly a decade before a spinal fusion “healed” my back. My GP was reluctant to refer me to the surgeon, believing, I think, that the pain wasn’t as bad as I said. The surgeon, on other hand, said “This is the worst I’ve seen of this condition. You’re in if you want it.” In the end, we have to take responsibility for getting the treatment we need, and not rely on doctors. I’m very interested in where that journey took Buckley.

My mother suffered from fibromyalgia for 5+ years. She writes “Julia’s story sounds like mine. I remember Jan. 1998. I went to a Best Friend’s Health event in DC. (I mentored 5th grade girls in a school program started by William Bennett’s wife.) There we did vigorous exercise. I made myself do the whole bit. For several days after I had such pain in my right hip that I was sofa-bound. That was the beginning of the debilitating pain. For 1 1/2 yrs. I went to 15 Drs. and health professionals before I got the diagnosis. Finally, flexeril + power-walking + pure water + organic food + FAITH got me better. Dad and I went into debt, about $1,700.00. It would be at least 5 years before I felt myself come out of the pit. Several months before my kidney transplant I weaned myself off the flexeril, and declared myself healed. Those were such difficult days.”

While I wouldn’t wish anyone to suffer from pain, I’m glad your interview finishes by her wishing that doctors would read her book to understand patient psychology better. Sorry, I have trouble believing that most alternative non-medical treatments have any efficacy at all other than the placebo effect – which I do acknowledge as a very powerful thing. I should probably read this book to enlarge my own views.

What a great interview! I’ve not really considered reaching out to an author to do an interview, but yours was so lovely and an addressed such interesting questions, it makes me consider doing something similar in the future.

Thank you! I had expressed interest in reviewing the book on Twitter, and Julia later got in touch via the contact page on my blog to see if I’d managed to get a copy. I took that opportunity to ask if she’d be willing to do a Q&A. Often I think the way to put something in motion is to e-mail the publicist and they will liaise with the author for you.

How fascinating: book, review and interview. I have had direct experience of a male doctor completely dismissing my concerns and the female doctor in the same practice accepting, dealing with and monitoring said concerns, even going up to the stage of a very necessary surgery. Then a male surgeon (shock!) dismissing my concerns and being very blase, to the point of telling me I had to sign consent for him to do anything he saw fit, versus a female surgeon who said if she found anything more than x, she would end the op, bring me round and discuss the options. I was really shocked by all of this (for some reason).

How terrifying!! I feel like I should read this just to support her and others like her.
One big question I have is did she talk about cost at all? I’m just thinking about all the people with chronic pain who might not be able to seek out different avenues because of cost.

She does talk about money a bit. When she exhausted NHS treatment she paid for some private treatment too. She had to move back in with her mother, who bought her a special mattress, etc. Some of the traveling she was able to do through her work as a journalist, but she did still go into debt doing it.